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June 2, 2011

Do Children with Autism Think?

I've often wondered, are children with autism aware of what is going on around them? Do they think? Do they reason? When you talk to them, all you get is a glassy, blank stare, if there is even any eye contact. Is anybody home in there? Do they know what is going on but just don't respond? Or are they lost in their own world, completely oblivious to what is going on outside? How do they sit there and watch the fan spin for three hours? (Talk about a long attention span!) What are they thinking? Do they even think anything? What do they feel (emotionally) when they bang their heads on the wall?

Our neighbor held a 1st birthday party for her little girl yesterday. She went to great lengths to include Noah [author’s autistic son]. I went round and round and decided it was best if I stayed home with him while Dave [husband] went with Mads [daughter] and Liam [other son]. Hard decision. I will tell you why I made it.

This was my neighbor's daughter's day. I cannot control Noah around unsafe food. Pizza, brownie cake and the best of the all, Capri Suns! Not my neighbor's problem. My problem. He loves balloons. There were probably 100. He would have tried to capture each one. They acted as decorative end pieces for ten banquet tables with polka dotted tablecloths and ornate centerpieces. The centerpieces would have been dismantled and shredded in a matter of seconds. My problem, NOT my neighbor's problem. He has recently started a round of anti-fungals. This makes him HIGHLY reactionary. If you give him something to eat and he does not want it, he will throw it at you. Could be soup. Could be a carrot. Doesn't matter. During anti-fungals, this behavior reigns.

As the neurotypical contingent of our family departed for the birthday celebration, I heard Noah, just barely audibly utter, "Bye, Mads" from my post in the kitchen. I went to the window and sure enough, she was walking into our neighbor's house. Within seconds he was at our dining room window, the window that frames our neighbor’s backyard. He kept circling the table, then jumped on it, which I corrected at least a dozen times. I then got him something to stim on, because I knew he would start talking if I did. Sure enough, when he had something to focus on, he sat right beneath that window, shredding celery. I plopped down right next to him to observe.

At this time, I implore you to stop for just a moment and think about the psychiatric descriptions of autistic behavior:

- He appears to be in his own world.
- He is indifferent to other people's feelings.
- He wants to be by himself.
- He doesn't seem to have any interests.

Does this sound like a kid in his own world? Sound like a kid who doesn't WANT FRIENDS!? To me it sounds like a child trapped in a body that he cannot control. It tells me there is a mind in there that understands with great clarity what is happening around him and is 100% cognizant of his inability to participate. And it makes him terribly sad. He is desperate to belong. His father and I, as well as his siblings, are very social creatures. He is no different. He is stuck.

As you may know, Levi lost his diagnosis in October and this has been great. I have been trying to gauge when it was ok to talk to him about his past diagnosis (after not even wanting to go back in time in my mind after all that hard work) but to pick his brain on what he remembers. This morning, he fell and banged his head (not in a stim way but from me trying to help him put his pants on in the right direction while getting ready for school) and as I was doing dishes tonight, my mind floated back to what things were like before, remembering 9/11 and how life differs now. So I sat down over chocolate GFCFSF [gluten-free, casein-free, soy-free] ice-cream, rice wraps with chicken and cucumbers and green beans and a pear on the side, to chat.

Mom: Levi, do you remember when you used to bang your head?

Levi: Mom it's been a long time—at least 5 months ago.

Mom: No, Levi, not when you accidentally fell out of bed. When you were little, and autism had you trapped inside. Do you remember that?

Levi: Yeah mom, that was bad.

Mom: Yeah, Levi, it was. What was going on in your mind when that would happen and how did you feel inside?

Levi: Mom, I was making bad choices then. I don't do that anymore.

Mom: I know that. But can you tell me what you were thinking?

Levi: Yeah, mom. I was really little, down on the ground, crawling on my hands and knees (using motions while telling me all this). I could just do that or go outside and play in the grass, mom. But you wanted me to grow up and I didn't want to.

Mom: You didn't want to grow up then?

Levi: No, mom. I just wanted to be little and crawl on the ground and be in the grass outside.

Mom: Do you want to grow up now?

Levi: Yup, I want to go to the moon someday, mom. I'm gonna be an astronaut, I'm going up in a spaceship and I will get to fly in the air like spacemen. Up high in a rocket, mom, it's gonna be so cool!

Mom (with tears in my eyes realizing that not only has my son lost autism, but he has gained hopes and dreams for a future that was robbed of us before, while losing things that hurt him and bound him as a POW of autism): Levi, I am so proud of you—you are growing up to be a wonderful young man!

Levi: Man?? I'm only 7 right now, mom!

Mom: I know, but someday you will be a man.

Levi: Yup. (Deep in thought.) A SPACE man!! (A long pause for a mouthful of that great coconut ice-cream and he now has a chocolate beard.) Hey mom!

Mom: Yes, Levi?

Levi: I love you so very much... Did you see I made you a heart on the computer?

(I look over to see the heart he has made out of qubees, and squeeze him and give him a huge kiss on the forehead. He again tells me loves me and kisses me back with his lips (still covered in chocolate), notices he has smeared me with it and we both laugh.)

Levi: Mom, you look silly!

Mom: Thanks, bud... you too! Look in the mirror!

(Levi looks in the mirror, laughs and then rubs it on his shirt.)

Mom: Levi!!! Does your shirt look like a napkin?

Levi: Yup! (laughing again) Sorry, mom...

Mom: Oh, Levi!

How I will take chocolate on his shirt versus fecal matter on the carpet and ceiling. Thank you, God, for your faithfulness to see our son in his misery, and us in pain watching him trapped by autism, and helping us get him back. Thank you for the chocolate on the shirt and the conversation I got to have with him, for the ability for him to tell me he loves me, and think of me and draw me pictures on the computer. I pray you bless others on this group with the same gift and hope to get there.